CF Number (long)

[Guest guest]

The number of persons with CF matters for example, for obtaining the category of

" orphan disease, " which entitles funds from the federal government for research

purposes. My sister died at age 20 from the effects of CF, and as I am age 73

(April) we average out to a survival age of 46 1/2 years. A bit silly. The CFF

survives from donations from those who are made aware of the disease by the CFF.

Their salaries and expenses, as with any organization categorized as " non profit

" for tax purposes come from those donations. Most of the donations are raised

locally by hard working unpaid volunteers associated in one way or another with

CF, and go to the CFF for distribution. The CFF alone determines who gets the

money for research or whatever they decide. I have been affiliated with the CFF

both on the state and national levels for thirty years and as they are the only

organization dedicated to the distribution of information about CF on a national

basis, we must rely on them to be factual. It goes without saying, as most

babies are not tested for CF, nor can there be an accurate count of those with

CF who do not attend clinics recognized by the CFF, the number of 30,000 is at

most a conservative guess. It has only been recently that non Caucasians in the

U.S. have been diagnosed with CF. Non whites and poor whites in the U.S. have

at best poor access to health care. That could alone account for the lack of

valid statistics. Certainly we should understand there are people with cancer

and other diseases that have not been diagnosed, and many have died having gone

undiagnosed. Statisticians can make educated guesses, and that is the best we

can expect. However, when the population continues to grow at a particular rate,

and the number given out by the CFF for those with CF remains fairly constant,

it is not wrong to question their statistics or their motives. By setting an age

level of mortality at little over two years from what it was perhaps ten years

ago, you can imagine how parents feel when their baby is diagnosed or that

someone who reaches 29 years old begins to fear the worst. I would like to be

informed if there is one antibiotic or other medication in general use by those

who have CF that was developed as a result of money granted solely by the CFF.

By not publicizing the fact that there are hundreds if not thousands of persons

with CF surviving beyond fifty years old, the CFF is being disingenuous. Hal